Blog · February 13, 2016

How I Deal

So many things happened these past few weeks that made me wonder about a myriad of issues.

I start every morning with a good dose of “positive”, “funny”, “loving” or “inspirational” images I post on my sleepingangel Facebook page. Why do I do that? Because it helps me start the day in a good way, remembering to keep the negativity away. There is always that “friend” that must post negative stuff, so I give them the benefit of the doubt a few times until I get fed up and unfollow them. I have no time for that crap. You have every right to post whatever you want on your wall, but I have every right to unfollow you as well.

Quotes help me immensely to start a new day in a good way. I swear by them. I have been a quote freak since I took a plane ride sitting next to a sweet 19 year old model in 1993 traveling from New York to Milan, who showed me her photo book, one I recreated for myself. On each photo she had a quote that inspired her. Gosh, I wish I would have written down her name! I have no idea who she was, but her spirit made a huge impression on me.

Some days keeping positive is a full time job. Just the other day Nicky got a NASTY wound on top of his right shoulder. I do mean NASTY in capital letters to emphasize it. It’s a wound that is hard to bandage, hard to make sure it heals properly, hard to deal with in every sense of the word. Nicky refuses to let me wrap his torso and shoulders the way I used to when he was little, and unfortunately the exposure leaves him vulnerable to get these types of wounds. I don’t blame him, I just wish there was another way to protect his skin other than wrapping. There just isn’t. So we deal with it by always thinking outside the box. “Let’s try this” and “Let’s try that”. But it’s frustrating to see something work one time and not work the next. Keeping a close eye on it it’s all I can muster my mind to do. Worrying of what “could” happen just dampens both of our spirits.

I do appreciate every kind and thoughtful word. I am alone most days, eager for adult conversation so the positiveness helps me a great deal. In the past I had to moderate a lot of the comments on my various social media accounts to avoid negativity, but lately the only one that frustrates me on occasion is my YouTube channel. Most people are kind and understanding, but a few aren’t. If these people saw first hand what we’re dealing with, they wouldn’t leave insensitive comments like the one I had to delete just the other day, that stated… and I quote:
“It affects only 0.01 of the population and only white people have it. No-one cares about this BS”.


The sad part of this post is that it’s so ignorant and lacks of true empathy. For one, just because a condition is rare, that does not mean the people don’t suffer from it. There are millions of people that suffer from rare diseases, mostly uninvestigated and incurable. For him not to care about them, shows me how egocentric this person really is. Besides… this person was black and he claims not to care because “only white people have it“? Wrong! EB is one of those conditions that is indifferent to race or gender, equally present in all populations on earth. Sure, some ethnic groups are slightly more severe than others, but as a whole, nobody is immune to EB. Nobody. Anybody can be a carrier. Truly.

I wish people would check facts before posting hateful stuff, no matter what it is. Just because you see a MEME come across, that does not mean it’s true. Am I the only one that checks, or to see if whatever stupid post comes along is true? Apparently. Be smart everyone!

One other issue I have dealt with recently is how I am made to feel bad for venting. Without fail, there will be someone that will tell me to stop venting and be grateful and “lucky” that Nicky is still alive. As if me venting makes me ungrateful? I came across this article that explained my feelings perfectly on the matter. Just because I am venting, that does not mean I want things to be different, I just want people to accept the fact that caregivers have feelings too and all we want is acceptance and understanding. We all have bad days. I want to be able to vent my grief and frustrations without anyone making me feel guilty about them. Is that too much to ask?

So, for those many, many folks that take the time every day to send me kind and supportive words: THANK YOU. Your support truly helps me deal with things in a positive way. Your kindness is appreciated more than you can possibly know!

Love, Light and Happy Valentine’s Day!!